2013 Survivors!!!
Comments
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46andsingle - I have a chemo-buddy who I still go visit when she's in town who gets a bus ride 99 miles to get to her chemo. At first I thought, "omg poor thing is on Greyhound!" but it's more like a van that brings patients from that town to larger facilities, returns the same day. After chemo, she has been fine riding home. (Of course, if you can get chemo locally, moot point) check into the american cancer society's assistance and such. The oncology group should have a few numbers for services esp. if they serve a rural population. — That day of chemo, while there are some side effects, most of them are greatly lessened or eliminated by all the pre-meds they have pumped into us (anti-nausea, antacid, antihistamine, & The Steroids - omg the steroids give some of us more energy than we know what to do with…). The evening & days following, you should have your prescription anti-nausea meds ready to go at your side. I was given both an oral and a topical - I never vomited once. I had some stomach discomfort but not doubling over as long as I used my topical anti-nausea. I got behind in my housework, yes, but I went for walks nearly everyday except chemo day and with AC a couple days after. The immune booster (neulasta) shot would knock me out for a day or so but even that effect doesn't kick in immediately but many hours later. With Taxol I think I could walk most days (if I'm remembering correctly), even the 4th and 5th days when the pain usually kicks in. My MO also switched chemo regimens on me when he learned of all my allergies and maladies.
So yes, they can and do tailor the type and rate to the individual. — The 2nd through 5th days of treatment of AC were pretty bad and I would say having help then is good but not 100% necessary - someone to keep bringing you ice water, ginger ales, smoothies, whatever. Then depending on the dosage, you have a couple weeks to bounce back usually (I was on the three-week regimen) - though my 3rd AC treatment was rough because I had a period during treatment and another 9 days later. If it were me, I would just make sure I had a couple weeks-worth of things that I could eat and drink in stock if I was on my own, I had to do a lot of that anyway since we are rural too and my husband and son are not cooks. and as schatzi did, I mostly spent the worst feeling time alone listening to audiobooks and playing Words with Friends though there were people in my household. — like so many comments here, it's do-able, not pleasant, but doable.0 -
466andsingle I had taxotere, adriamycin and cytoxan simultaneously for six treatments. I never vomited. Not once. I had mild nausea the first night each time and I had awful indigestion because I was supposed to be taking Prilosec and did not know it. The one side effect everybody gets is constipation. So you have to take a stool softener. But the antinausea drugs are VERY effective.
If you are underweight, it might be the CANCER that is taking your nutrition. I dropped about 30 pounds in about two years before I was diagnosed, and that was without any effort or desire to lose weight. I went into chemo on the borderline of being underweight and lost maybe two more pounds during chemo, which I have now gained back. Some people complain about GAINING weight during chemo because of the steroids given with it.0 -
Also to echo what Shianne said, it sounds like the cancer may be in the lymphatics of your skin. Your dickwad doctor is trying to save your life.
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46andsingle,
The only thing that I think we missed giving our opinion about is that if you find chemo not-doable for you, you can always quit. But don't quit before you even start. The fear of the unknow was the worst for everyone of us.
Hang tough, Sheryl
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Marian- the video was great and your daughter is absolutely beautiful! I am so proud of you for finishing chemo and with a smile and sense of humor. Would have loved to see the pole dance!
46and- I would agree about the giving chemo a chance. And as others say call your local cancer organization and see if maybe you can get an aide that can stay with you for a couple of days after chemo, if that is even possible. Speaking on the chemo/rad side is a little out of my league since I did not need either one. What it boils down to is what are you comfortable risking. If you feel you need to get a 2nd opinion before starting the chemo then do that. We can only give you our opinions on what we would do if we were in your shoes. I think some judgements are a little harsh and you should be getting the support that you are looking for. Please keep us informed. hugs!
Had a rough night last night. got about 4 hours of sleep and that was it. Had horrible nightmares all night and woke myself up screaming and crying. It's a wonder that I did not wake my family up. Hubby slept right through it and he was right beside me. So I've been up since 4am and I am getting ready to go to bed. Hope you all have a wonderful night.
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http://youtu.be/tQtClHyxGCQ
I hope this link works. For Juneau!!!!0 -
Chrisrenee, I am sorry to hear about your nightmares. Were you dreaming about something cancer related? Hopefully you will be able to get some better rest tonight.
I think I was one of the ones being too judgmental with 46andsingle. Just scared for her, and maybe seeing some of my own experience in what she's going through. (Although I cannot complain about my surgeon--she was great. It helps to have a female surgeon, I think.) Anyway, 46andsingle if you are still out there, I do think you are being brave and probably wise about your surgery decision. I have what you are hoping for--a smooth, flat surface just perfect for a pretty tattoo! So I am also thinking about doing that when the discoloration from rads goes away.0 -
chrisrenee: sorry you had such an awful night. ((hugs)))
Just getting ready for work - wow does Monday ever come round quick. Oh! well. Hugs to all xxx
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Folks, I just posted this to another board and I'd be interested in hearing your thoughts too. I got to thinking about this all afterreading a tweet from someone who was all in favor of work towarda cure, but she wondered why the survivors were largely forgotten when they need help too. That really resonated with me. Feel free to reply here or PM me.
Topic: Why was I stronger DURING treatment than I am now?
Forum: Moving Beyond Cancer — Getting on with the rest of your life, from rediscovering intimacy to coping with hot flashes.
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As a woman with stage iv breast cancer, I read a lot of blogs and emails and tweets and articles about how stage iv women feel marginalized from the pink movement--both in acknowlegement and in research dollars. But the tweet that I read shed light on the other side of marginalization: the survivor side. Show up for some walk-a-thons, go back to work, go back to your life and that's the end of it. But I think, after managing your crisis, it's only the beginning.
Let me ask:
Do you feel that there is enough attention paid to the needs of survivors? That is, do you think orgs like Komen who tout cure and survival, lend support to you after the crisis?Do you feel that books on the market about survivorship help or hinder you? What's missing from the conversation?
How much does the concern/fear of recurrence or mestastasis occupy your thoughts? Has it ebbed over time? Are there PTSD triggers that you experience?
What does survivorship means, exactly? Much of the discourse is on killing cancer cells, but once they are gone who helps with the person who is--in an odd sense--left behind?
I would sincerely like to to hear your thoughts about this. It's an important issue that perhaps needs some rethinking in terms of specialized care or management.
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46andsingle- The anti nausea drugs will most likely keep you from vomiting. Most likely the problems you will have is just a feeling of being extremely tired and wanting to sleep all day. I would have my treatment on Wednesday and by Friday around 3 pm I was feeling tired then all weekend I was really tired. Just standing to take a shower was very tiresome. That's when having no hair was a godsend so you could just climb in the tub and take a bath. But you aren't so tired that you can't get yourself a drink or nuke something in the microwave. You can do this. It's not fun alone, but it's doable. The only real problem I had was constipation. I'm sure I'm not the only one who had that problem. It was a delicate balance with that. The anti nausea meds caused constipation, but the chemo caused the diarrhea so you had to carefully balance that out each treatment.
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Scorchy, I feel that way. Although I'm not finished treatment yet, since my surgery most people seem to think its all over. That I'm supposed to just carry on like before. I feel more tired now then I did then, I'm having more SE now then during chemo (I had none then). But friends and family seemed to magically stop calling and if I happen to complain about something that's bothering me like the neuropathy, or the stress keeping me awake, people reply with something like 'but it's over now, right?' I want to scream that IT WILL NEVER BE OVER NOW!!! I feel more overwhelmed at being on my own after all this then I did dealing with the dx and treatments. Our life was a series of structured appts, we were told when and where to be for the greater part of a year or more and then all of a sudden the apron strings are cut. We are told Go, Live, Your free. See you in 3 months or 6 whichever but what do we do till then?
It's been 4 weeks since I've seen a dr. I haven't gone that long since last July. Every ache, pain, itch, twitch or burp has me convinced something is wrong.
Actually, the founder of this site has a wonderful book I'm reading. It's called "living well beyond breast cancer" by Marisa Weiss and her mom Ellen. Ellen is a survivor herself.
Anyway, I think there is support out there, but finding it can be daunting.0 -
Scorchy, I posted that I agree regarding a new thread. It seems, myself included, that the emotional aftermath is worse than the treatments, having said that, I did not have chemo!!!!!
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Scorchy - absolutely agree. I was at my yearly check up with my GP this morning and was talking to her about my fatigue still and she said that because we finish treatment we still need to recover - both physically and emotionally. Depending on our tx the physical recovery can take up to a year, she said that emotionally we will learn to live with cancer/being a survivor.
Our Cancer Agency here in the Okanagan has an extensive library so if I do need any books, they are likely to have them.
Its an unfortunate part of our process that people who see us finished treatment, hair growing back... blah, blah, think we should be back to normal. They have no idea that our 'normal' is living with cancer every day.
I am so fortunate that I see my MO every 3 months due to the clinical trial I am in. Also next month (because of the trial) I will be having my yearly CT/Bone Scan and mammo.
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Scorchy, thanks for asking those questions re survivorship. It is clear from many posts on this forum that many are struggling to get their lives back together again after treatment. So there certainly is a need for support for these people. Some are clearly suffering, and simply don't know how to get beyond this.
As for myself, I do not really have many of the issues that I see here. The fact that I am 58, and probably older than most here, may well play a role. On Dec. 19, 2011 I was diagnosed with endometrial as well as breast cancer, as well as gallstones. This was all totally unexpected, and it was devastating news. From the very beginning I decided to approach this as a project that needed to be done. A very unwanted, uninvited, disgusting project, yes, but there was no getting around this other than right through it. I calculated that no amount of self pity would change the situation, neither would unnecessary googling, stress and worry. I SIMPLY REFUSED TO BE A VICTIM. The other fact that I kept foremost in my mind, was that this was a temporary road block. There was a definite END to this. So I told myself to take charge of the situation, to see myself as the most important player on my team, and to do whatever I had to do to get well again. There was a steep hill to climb, and I had to get myself into the right frame of mind.
First there was a hysterectomy and removal of the galbladder 10 days after diagnosis. Five weeks later followed the mastectomy, SNB and TE placement. Four weeks later chemo started, and four weeks PFC 25 radiations followed. Rads finished on 6 July last year. Up until the end of August I felt adrift, floundering, not knowing how to function in the normal world again after being outside of 'normal' for so long. It was a lonely time of soul searching, and trying to make sense of the lifechanging events that had happened. I was still feeling the after effects of chemo and rads, still looked like a cancer patient, and had very little energy.
Again I had to make a deliberate decision to become part of normal society again. To become strong again, I would need to exercise, so I made arrangements at the gym to start slowly, and work my way up. I forced myself to drive there three times a week, because I did not have the confidence/strength to drive during treatment. I went back to my gentle yoga class once a week, and I started attending other weekly meetings/duties that I had done before cancer. Also took up my position as part of a music group again. The more I pursued these things, the more normal I began to feel. My thoughts were occupied less and less by cancer, and more and more by what I was doing every day. I was now talking about other things, not cancer anymore. It moved further and further back, until life was front and foremost where it belonged, and ca is now off the radar, relegated to somewhere in a dark corner.
Do I think about recurrence, metastesis etc.? Sure, I do. But I am not allowing it to occupy my thoughts, and consume and scare me. Today is here now, and today I am healthy and energetic. Why spoil it with something MAYBE in the future I have absolutely no control over? I am now enjoying my life to the fullest, something I did not do before bc when I took my health for granted, and did not take care of myself as I should have. I'm so grateful for what I have, I am at peace, and count my blessings every day. If ca strikes again, I will cross that bridge, and handle it when I come to it, NOT before.
That's my two cents. Hope it helps your research, Scorchy.
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Liefie.....I hear everything you are saying....off topic, but interesting, I also had my gallbladder out just a short time before being dx....I'm not sure that age has anything to do with it as I am 65 yrs with two sons that I would like to see married some day and maybe even a beautiful grandchild thrown in for good measure....lol...I did many things
to try and keep the emotional "stuff" in check, including therapy, exercising everyday,
telling myself that I am 65 after all with 3/4 of my life over....nothing worked for me....
until I was encouraged to take some medication, which has certainly helped . I commend you on your attitude and your strength and If you had asked me before BC
about mine, I would have said all the things you are saying....I'm so happy you are coping better than me....I live my life now one day at a time, which means if I'm relatively pain free and have not given BC too much thought to the point where I need an anti-anxiety med, then it's been a good day and pray for the same for tomorrow....ok enough0 -
Thanks Scottiee and Liefie - just another reminder that while we all share something in common, we're all different. And it's a good thing......that way we both can empathize with each other and yet have something to offer.
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Dear Scottiee, like 301724 just said, we are all so amazingly, wonderfully different. You have the right attitude, and such a wonderful sense of humour. If you need a pill now and then to help you cope, then so what? Twelve years ago I had depression, and needed medication to overcome that. Maybe the lessons that I learned from that helped me to cope emotionally during the ca crisis, who knows? I just could not wait to be done with being a cancer patient, and I just hated feeling so weak, so I did whatever to get that out of the way as soon as I could.
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Stride- I was having a nightmare that someone was chasing me and then my damn bed sucked me in. It was a strange ass nightmare. I woke up screaming and crying which i'm surprised didn't wake my hubby up. As far as 46andsingle, I think she needs so much support at this time. Whether we feel she is making the choice that we would make or not. Know what I mean? I am extremely worried about her too as it does sound like it may be in lymphatic system. I don't want her to not get the necessary treatment she needs. Right now it's all about love and support and she has turned to our amazing thoughtful group for both. Thank you for allowing me to respond. love ya girl
Tazzy- Thank you! I hope you had a wonderful day at work.
Scorch-I'm not really sure how to answer. Right now I'm still going to dr appts pretty regularly. I know the appts don't last as long as they used to. I know I get the phrase " oh you look great for someone with cancer" which makes me want to respond back with " how the fuck am I supposed to look"? brings me to something that was brought up to me today by a patient. He asked me how I was doing I told him I'm still here and still tired. He then tells me that I have a pretty big following within the cardiac rehab area. I asked "really" he said "yep haven't you realized you are like a grandchild to all of us, we just love you". That made me feel really good.
Liefie and Scottie- I have considered therapy because of this damn disease, but not sure if I'm prepared to be on any additional medication. After I had my first baby 16 yrs ago, I went through severe depression and was on Zoloft and my ex-husband and his family would make snide remarks about it. " oh look there SHE is, she can't handle having a baby" or "How many pills does it take to make Christy look like a zombie?" Very hurtful. i know I have depression and am trying to make the best out of what I have and for the most part I do. I just want to move forward with my life and not have all the second guessing all the time. I think I'm going to insist to Onc to have a CT chest/abd/Pel for my own comfort to make sure that I don't have anything forming any place else. i know the statistics state that 2 of the most common places for cancer to attack after having BC is brain and abdomen. I constantly feel for bumps in my stomach. Maybe a little too paranoid huh???
update on me: I have signed up with a dietitian that my employer pays for for 3 mos. I spoke with her Saturday and she says that I have already started in the right direction as far as losing weight and exercising. She wants me to start at a reachable goal for weight loss, so we agreed on 20 lbs. I get a call from my Oncologists office and my labs that I had last thursday (iron levels) came back severely low. So I am now scheduled for 2 iron infusions this week. One wednesday and one friday, i really hate needles btw. Then I have to do a repeat iron level in a month, so i will do it on my next appt with her on 3/22. I go back to the PS on 3/8 for my 3 mos follow up since permanent implants have been placed. Is it crazy that I feel like I just got them yesterday? Still amazed at them every day.
Hope everyone is having a great day.
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Chrisrenee, once you have those iron levels back to normal, you will notice that you have more energy, and are not so tired anymore. The dietician is an excellent idea! Good for you! She's on your team now, and it always helps to know you have support. Glad you're enjoying the 'girls'!
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Liefie- yes once they are back to normal I'm sure I will be back to normal in no time. I can't wait to have more energy. The dietician was very nice when we were talking she said that she was not a twig thin dietician, that she weighs around 180 lbs and has struggled with her weight her entire life. That was nice to hear. The girls are nice, just wish they were a bit bigger, but implants only go up to 800 ccs and my PS says you can't stack silicone implants but you can saline (which he doesn't use). I'm ready for the FDA to approve the 1500 cc implant. When they do momma is getting a new bigger pair. hahaha
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Chrisrenee, before you get those 1500 cc implants, just make sure that they make big enough bras - LOL!
That dietician sounds like the real deal, and very down to earth. You are lucky indeed.
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liefie- Don't know if you or anyone else watches Double Divas on Lifetime, but it's one of my new favorite reality shows. it is freaking hilarious. This woman gets new implants every year as a gift to herself. I want new ones but not as big as these.
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That is just gross !!!! I really do not know what is so attractive about that.
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I know right Joanne! Like I said I want bigger ones but not that big! She had to get a special made bra to hold those boulders up.
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Hi Ladies,
Long day so just stopping by bf heading to bed!
Scorchy- have a lot of comments from my personal perspective but will respond tomorrow.
Hugs and Love to all!0 -
Chrisrenee - LOL! Seriously, I wonder how it really feels to be lugging those things around all the time, and how her back and shoulders hold up under all that weight? How do you sleep with those oversized watermelons in the way? I am no bigger than two fried eggs on an ironing board, but I'm perfectly content, thank you.
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Bet those whoppers will look wonderful when she's in her 70's and the only thing that hasn't sagged
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Ladies... I just got to this page and had to take a break reading at Scorchys post, since I'd like to give it some thought and reply.
I just want to thank you ALL. You are wonderful. You all reminded me of who I am and that I have to stop expecting to be someone I'm not, nor may never be again. My Friday party was SO fun and then Sunday my friends threw a surprise party for me. I was floored and felt truly loved. Heres a group photo. I'm in the red/grey striped shirt on the right side.
I have stopped counting calories for now. I will eat mindfully and exercise regularly. This has already helped ease my obsession.
Chrisrenee: sorry about your nightmares.
Marian; I echo others... Beautiful daughter (and is that a Ausdie accent I hear? I lived in South Austrailia for 7 months. Beautiful country.) congrats on hitting another milestone; one step closer to the finish line.
46and; everyone already said it all. And I think someone suggested you look to a chemo thread for more experience and recommendations (if yours interested). I will only say that FOR ME I prayed on it (I actually got on my knees for the first time in my life and begged for guidance)... I didn't like the answer, which was SUCK IT UP, PUT ONE FOOT IN FRONT OF THE OTHER, AMD DO WHATEVER YOU NEVER TO IN ORDER TO HAVE THE LONGEST LIFE POSSIBLE. THERE ARE RESOURCES to help. You won't be alone. Ok that's my 2 cents.
Mcook: no DRASTIC changes whilst in the midst of major life changing events. Like Tazzy said they do... Let the dust settle. In recovery we suggest no MAJOR changes the first year so you can get your footing. I don't know about you but I feel like a toddler the days.
Tazzy; I'm not getting on the scale for two weeks. Part of my plan to break this obsession. I can only hope I'm swimsuit ready next month for Florida. I leave on the 21st.
Ok more tomorrow when I have read the rest of yesterday and today.
Nighty night ladies!0 -
Chrisrenee; holy TITS BATMAN!!! WTF!! The dr should lose his license for doing that to her. She needs a psychiatrist not a PS.
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